Friday, September 30, 2011

Robbie was intubated for the first 5 weeks of his life. That's a long time to sit and watch your baby not breathing on his own, for the record. And the thing about being intubated is that's all you can do - watch. You can't pick them up or jostle them around much because you can't risk pulling that tube out. And believe me, once you've seen it come out by itself (which Robbie did something like 5 or 6 times during those 5 weeks, which no, isn't normal) you really don't want to have it happen again. Seeing nurses run is never encouraging. Seeing their hands shaking is even worse. Watching your child limp and blue, and someone manually bagging oxygen back into their bodies, well, it defies anything I have words for. My point is, when they're intubated, you don't even want to do anything except watch their chests rise and fall.

Which leaves a lot of time for looking around, too.

I'm a fairly (okay, extremely) social person so spending 8, 10, 12 hours or so in the NICU doing basically nothing, I eventually got to chatting with almost everyone around me at some point or another. I got to know their stories; What gestation their child was born out, what caused it and so on. There were three or four of us with micropreemies who all spent a lot of time together. Our babies were the most critical, so we were all clustered together in a room that was doubled as the admit area. We saw everyone come in, from other micros who would eventually join our long-timers club, to full termers who had some trouble at birth or right after, and of course, everything in between.

I have a very clear memory one day of sitting, talking with the mom of a 25 weeker who had been born just 4 days before Robbie about another baby who had been moved to the step-down unit that day. I had been surprised to come in and find that baby moved. I must have asked if she knew where he'd gone or something, and she told me he'd gone down to the other unit. I was surprised because he'd been a 29 weeker who wasn't much more than 2 pounds. Robbie must have been 3 or 4 weeks old at that point. He and my new friend's daughter weighed about the same as this baby who had been moved already, but here we were, still listening to the sound of the ventilator alarms on our two babies. (The sound of which will haunt me for the rest of my days, I swear.)

What I remember was when she answered, she said it with this sort of defeated sigh. "He went down to the pods." (The pods being the brand new step-down unit that had opened two days after Robbie was born. It was NICU Mecca in our minds.) My eyebrows shot up "Really? Already?" She looked chagrined, "Yep." We both glanced at our intubated babies, up at their monitors for their vitals and then back at each other. I think her daughter was actually on an oscillator at that point. That's a specialized ventilator not-so-lovingly referred to as "the jet" because that's approximately how loud the thing is. All I could say was "Wow." We were quiet then, both of us silently reflecting on what a difference 3 or 4 weeks could have meant to our babies.

I'm not ashamed to say I was jealous in that moment. I was jealous of that baby's mother being rid of the vent, being rid of that room we'd lived in for so long. I was jealous that she could now do something besides just watching. I was jealous that she got to keep her baby inside her body long enough to make such a profound difference in our experiences.

Of course, now I have enough distance and perspective to realize that 29 weeks is still really early. That is a mom who still worried if her child would survive birth or the NICU. That was a mom who also saw her baby stop breathing and turn blue; a mom who had to leave her child in the care of sometimes literal strangers each and every day. While our experiences were somewhat different, they were also very much the same. But in that moment, I had more appreciation for the difference three weeks can make than at any other time in my life. I so wanted to be that 29 weeker mom.

At my OB appointment on Monday, my doctor walked in and beamed. "Twenty eight weeks!!" I couldn't help but be excited with her. I told about the 29 weeker I remembered and she nodded. We agreed it's still too early, but it sure was exciting to be this far. She felt like we were going to see at least 30 and was very happy about it.

Because my labs last week had been pretty stable, I got to take the week off from the pee jug and just had some blood work drawn that day. I left feeling pretty confident about the course of things. Of course, my body is never happy with happy, so the nurse called on Tuesday to kill my buzz.

ALT was back up a bit, to 63. That's still better than it had been, but this week my AST creeped over normal as well. It should be under 30, and it was 33. That's not horrible, but because that one had been normal and now wasn't, it added a layer of concern that I could have lived without. A few other things were just slightly askew as well. My potassium was just a little low, glucose just a little high though I passed my 2nd glucose tolerance test the week before.) The nurse indicated that my OB still considered these numbers stable, and to continue with our plan.

I hung up the phone and started cussing. I wasn't sad, or worried, or anxious. I was angry- absolutely pissed, in fact. What the fuck is wrong with my body? Seriously, a few years of infertility, 2 miscarriages, and then I get preeclampsia at 26 weeks? WHO THE HELL GETS PREECLAMPSIA AT 26 WEEKS? The odds are pretty much astronomical against it. But who? Yeah, this girl.
And then I get pregnant again and at 26 weeks, it becomes clear we're headed there again? Seriously? SERIOUSLY? I was mad.

I spent a full 24 hours just being pissed off. Everyone around me tried to be encouraging, but I didn't even want to hear it. I didn't want to hear about my blessings or my luck or any glass-half-full stuff. I just wanted to be pissed off. And I was.

Of course, after I had my temper tantrum, I was able to think more clearly. I remembered again that 29 weeker from the NICU. And I focused on how far we have come. When you get a call at 26 weeks to come for steroid shots immediately, you don't expect to see 29 weeks with a baby in your belly. But I was here anyway.

So here I sit, now at 29 weeks and 1 day. Chello is kicking at me, and I'm feeling hopeful. We're still living one day at a time, but those days have already added up to 3 more weeks than we got before. While I hope they get to add up to 3 more weeks, and then 3 more weeks again, I know that what we have matters a lot. And I am grateful.

13 comments:

Trish - one can always be hopeful that this time will be different, although like you, I am cynical and jealous at those that have it different. With Gavin, it was one thing after another with the pregnancy. We were literally by the skin of our teeth able to save the pregnancy with an emergency cerclage - had my high risk appt been two days later we would have lost him. Then a stitch ripped at 24 weeks and the bleeding caused enough uterine irritability to keep me in the hospital. Finally a terb pump worked and I was going to go home, and my water broke at 26 weeks. But it wasn't a gush, just a trickle, so they kept me there. At 27 weeks I spiked a temp and had to deliver. It just seemed like "what else can happen?".

On the other hand, my cousin's cervix started shortening around 20 or so weeks and there was concern on and off the rest of the pregnancy. Things would come up, they would get all tense, and then they would stay "just stable enough". And she made it to full term. And then made it to full term 2 more times.

What was it that kept her on the brink and pushed me over the edge? Who knows, it's life great lottery of statistics I suppose.

As irritating as it is, my hope for you is that you stay on the stable side of that ledge. Stranger things have happened.

As I sit here, 2 days shy of 26 weeks on bed rest with a shortened cervix and contractions, taking progesterone shots and procardia to try and keep the contractions at a minimum, I am jealous of your 28 weeks! This is also my second baby and I dealt with much of this during my first pregnancy and was told it was a fluke and probably unique to that pregnancy, clearly it was me and not the pregnancy because it's happening again. I also developed pre-e with my first pregnancy which is why I was delivered though it was much further along, so I know the feeling of wondering just what else can happen in one pregnancy! I know the feeling of just counting the days and being happy that one more week, one more day has passed and you're still pregnant because that can make so much of a difference!

I just want you to know that I've been following your story since Robbie was born and I'm praying for Chello to stay put for many more weeks.

Oh MommaLea- I will say a prayer that you get to see my 28 weeks and more! I hate that anyone goes through this.

Bridie, thanks. I try not to get too wrapped up in "why me" but Tuesdays labs really threw me into it. I'm over it now. (well, mostly) I know that for as much as 26 weeks sucks, I could point to people who would have given anything to have those 26. Someone always has a harder story. But Tuesday, I wasn't feeling reasonable, I just had to have my little pity party and then move on.

Hang in there Trish. Everyday Chello gets a little stronger and a little more ready for life on the outside. No matter when that is (and I hope that is is several more weeks at least), you are doing everything you can to prolong that date. You are one strong momma! :)

I keep checking your blog just to make sure there are NO updates, because that way I can assume you are still pregnant and ok. I have no words of comfort or advice, just wanted to let you know I'm still reading and hoping, hoping, hoping for your family that it's many more weeks before your little one comes out to meet you. All crossables crossed! Take care.

You've earned the right to take a day and work through all the emotional stuff... the grass is always greener, and less green if you just look left or right - but no matter which way you look, you are still standing where you are and it's a tough spot.

Amazing perspective. I hate that you've had to have so much drama, roller-coasters, very real fears and risks throughout this journey. Thankful for where you are now, so close to those beautiful 30s, and praying with you for many more weeks of safe cooking!And I hope you have had a wonderful birthday. :)

I keep checking to see if there is a new post. Hope you are hanging in there.

I like to think there's a special place in Heaven for NICU moms. Doesn't matter if it's 26, 29 or 33 weeks. Watching your child(ren) suffer and being scared.to.death that they're not going to make it - nothing can prepare you or help you through those times.